“Brain Mind Pain” Meeting Explores Challenges of Europeans with Long-Term Conditions

“Brain Mind Pain” is an MEP interest group that makes an unusual connection. It brings together common interests from disparate disease areas – neurological conditions, mental health and chronic pain. Its most recent effort was a March 8 meeting entitled “Optimising the European Social Pillar to #MakeWorkWork for those affected by Brain, Mind and Pain Conditions.” GAfPA was pleased to attend.

The event encouraged an in-depth look at the issues that face patients with neurological, mental or pain-related conditions: employment rights, inequity and the need for standard definitions to guide policy that can help patients.

Written Declaration
Following a welcome statement by Joop van Griensven, the president of Pain Alliance Europe, Marian Harkin MEP, offered a few words on the recent proposal for a Written Declaration. Harkins serves as chair of the Brain Mind Pain group.

The declaration defines employment rights for those affected by neurological disorders and chronic pain conditions. Though it failed to attract the requisite number of signatures to pass and become an official policy of the parliament, it did garner 180 signatures. The strong level of support is encouraging, and the process generated much-needed debate on this important issue.


European Social Pillar Framework
The representative of the European Commission, speaking on behalf of DG EMPL, explained how the new European Social Pillar framework should be implemented through both legislative and non-legislative means. Largely however it would need to be driven by Member States. It would seem reasonable to infer that fear over the EU being seen as interfering unduly on social issues is largely behind the emphasis being on ‘soft measures’.

On behalf of the Interest Group, Donna Walsh explained some of the key issues raised in their submission regarding the framework. A key challenge, she explained, is the lack of a common definition of disability in the EU. However, the UN Convention on the Rights of People with Disabilities offers a good model, which can be used to move beyond a narrow medical approach to the term and better encompass disability’s social consequences. A common, comprehensive definition can help to shape policies that support, for example, the employment of people with long-term conditions.

The IG’s ‘Book of Evidence’ has many striking statistics reflecting the impact of chronic conditions across Europe, especially the high levels of inequity. Of particular relevance to the work of GAfPA is the evidence demonstrating how early diagnosis and appropriate treatment and management of these conditions is crucial to individuals being enabled to lead independent, fulfilling and productive lives.


Other feedback on the Social Pillar Framework included:
• Andrea Antonovici explained that the European Multiple Sclerosis Platform just launched a guide for healthcare professionals, produced in partnership with the Work Foundation, to help people with newly acquired MS to continue working.

• Kate Gallagher from the European Patients Forum described a new campaign promoting universal coverage for all patients with long-term conditions in the EU. The campaign supports implementation of the Commission’s Social Pillar consultation.

• Another of GAfPA’s 2017 partners, the European Pain Federation, described the Societal Impact of Pain campaign. It has now been running for 5 years. Executive Director Sam Kynman highlighted recent work with the Maltese government.

The annual SIP meeting takes place in Malta in June 2017 with the official endorsement of the Maltese government. The Maltese Prime Minister will give an address at the meeting. GAfPA will be hosting an advocacy workshop at the SIP meeting.

Overall, all parties welcomed the principles set out in the Social Pillar framework, but had reservations about the scope and extent of the likely implementation. There was widespread concern, for instance, that it applies only to Member States in the Eurozone and that even some of those countries may be reluctant to act upon the framework’s principles.
The good news, however, is that a high level of determination exists amongst stakeholders to disseminate and urge implementation of the principles. As MEP Harkin articulated, the Social Pillar framework presents an opportunity to work together to improve the lives of millions of people across Europe living with the disabling consequences of chronic and long-term conditions.


Neil Betteridge

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